I am so tired of disconnects, battery alarms, cords, plugging in power packs, dealing with home health providers, and apnea monitors in general. What a pain. Isn't that selfish when I know that this monitor has saved my baby's life umpteen times? I AM thankful for it, I'm just tired of having it. I'm tired of having to have it. I'm tired of starting our count over again (this week after not even making it a full day each time). I'm tired of jumping out of bed at night, heart pounding, disoriented, trying to revive my too peacefully sleeping child.
I'm tired of telling people that no, we haven't really gotten anywhere and yes, they are still thinking she'll outgrow this. Of course, total strangers have different reactions when they see the wires attached to Haven and her flashing box. Some whisper to each other or speak in hushed tones. More than once I've caught murmurs of, "that baby's on oxygen." I'm so mean. I want to correct them. "This is an apnea monitor. If she were on oxygen there would more than likely be some of it directed into her face, don't you think???" The polite trip over themselves asking what is wrong with her. "Excuse me," they'll say, "I don't mean to be too personal, but do you mind my asking what is wrong with your baby?" The rudest put it more this way, "What's wrong with it?" It? IT??? As if having a medical condition negates my beautiful baby girl's gender! But what can you say? I say, "She forgets to breathe," leaving out any medical jargon as I assume these people must be ignorant and uneducated, therefore deserve the explanation I give children. "She looks so healthy!" I love to tell people that she's not sick, just forgetful!
When I see other people lifting their children out of grocery carts or car seats, I catch myself expecting to see the monitor follow! Hannah says she does the same thing. Sometimes when I hold a little one with no monitor it seems so easy. We love hanging out at the pool. Haven can just crawl around unattached for a change. Everything with the monitor seems more difficult. Unplug the power pack in the morning and roll it all into the monitor bag before lifting my waiting child from her crib. Change her diaper and dress her while keeping wires straight and untangled...and don't forget to KY the probes or I'll have disconnect alarms all day. Duct tape cords to her outfit to make them harder to unplug simply by crawling away. Poop is fun. I love it when the wires dangle in the stinky mess and then I have more to clean up! She has learned at nap time that if she can reach her wires and pull them out I will come running. Getting in and out of the van is a chore. Wires love to grab handles or armrests causing a disconnect. How many times a week do I stand in a parking lot unbuttoning Haven's outfit to plug her back in? Getting up with her in the night is tough. If she's fussy, I have to unplug the power pack, stuff it in the bag, do whatever she needs to calm down, then stumble around in the dark, trying to plug her back in before I lay her down. Ugh! Nothing is easy.
Then I think about the really sick babies we've seen at Children's Hospital. The 15 month old who'd been in the hospital for 9 weeks waiting on a bone marrow transplant...the tiny newborn with no parents by his side who was attached to so many IVs they were all controlled by a computer...the precious little girl who's deformed face looked alien and haunts me (when I commented on Haven's crying her parents gave each other a look and then informed me that they'd love to hear their baby cry...she can't). Compared to them she is so perfect and healthy that I am humbled. She is beautiful and smart and active. She lights up a room and doesn't automatically invoke sympathy. How must those parents feel? Knowing that their children may never lead a normal life, may not even survive. Knowing that there are years of multiple surgeries to come. Seeing people avoid looking at the child that they love so much or looking upon her with pity or, worse, horror. I have so much to be thankful for.